Mission Possible - Kick Epilepsy's Butt!

A few months ago, I testified before the Institute of Medicine about the impact epilepsy has on patients and families.  In preparing for the testimony, I combed through my plethora of medical records and came up with a list of statistics that summarize epilepsy’s impact on our lives specifically.  It was pretty clear that we’ve been getting our butts kicked by epilepsy for quite some time now.  Here’s the testimony: 

Our daughter Savannah was healthy and typically developing until age 2.  Our introduction to epilepsy came when we were abruptly woken to the sound of Savannah shaking and gagging.  We didn’t know she was seizing.  We thought she was choking.  Doctors called her seizures attacks and spells, but never seizures, and we were repeatedly told she would “outgrow them”.  Savannah is now 17 and seizes daily.  She is intellectually disabled from the seizures and will never be independent.  Here is a snapshot of 15-years of epilepsy from a surveillance standpoint. 

Medical:

Seizures to date - 27,949.  Savannah’s has yet to outgrow them.

Years before diagnosis - 3

Neurologists we saw before diagnosis - 7

Epilepsy treatments tried to date - 26

Treatments that have stopped her seizures – 0

Cause of her epilepsy - unknown

Financial:

Monthly cost of Savannah’s current 5-drug regimen - $1,640 (excluding Diastat)

Times she needed emergency rectal medication (Diastat) to stop her seizures last month - 7

Cost of one Diastat - $183  ($183 x 7 = $1281)

Epilepsy-related hospitalizations (including 3 surgeries) - 11

Cost of Savannah’s last hospital stay - $53,475

Life:

Days of school she’s missed so far this year – 43 (out of 121 days)

Years she’s had an IEP - 12

Years we’ve had to fiercely advocate for an appropriate education under that IEP - 12

Time in a day that Savannah can be left unattended - 0.  This includes showering and toileting.

Family:

Times I was late to work last week because of seizures - 2.  This is common.

Times my husband and I have been on the brink of divorce because of epilepsy - 3

Times I’ve been clinically depressed since her diagnosis and needed treatment - 5

And then there are the factors we can’t quantify:

Times we’ve had to cancel an outing or because of seizures - ???

Years Savannah will live before the seizures kill her - ???

As a family living these statistics, what do we need?  In the early years, we needed:

-To be told she had epilepsy.  Tiptoeing around the diagnosis robbed us of precious time.

-We needed the facts – like the fact that ~36% of people with epilepsy don’t respond to treatment.  We lost a great deal of trust in doctors because of their choice to censor.

-We needed to know that seizures could manifest in ways other than tonic-clonics.  We unknowingly stood by as Savannah had subtle seizures for hours in the early years.

-We needed support!  Greif counseling would have shown me I wasn’t losing my sanity in those early years – I was grieving.  Introductions to other families would have helped us feel like we weren’t alone.  And a general public awareness of epilepsy would have been useful.  The last thing you need is to see when your child is seizing in the middle of the soccer field is parents shielding their child as if your child is contagious or offensive. 

What do we need today? 

-We need to know the cause of her epilepsy.  Why do we treat the seizures and not the cause???  We need to move away from this dogma.

-We need to bring down her medical costs.  Were drowning.

-We need doctors and teachers that won’t give up

-And we need help.  And I’m not just Savannah’s Mother but I’ve also had become her Doctor, Pharmacist, EMT, Lawyer, Teacher and Advocate.  No one person or family can do all of this.

Please.  Please.  Help.

Thank you

     Yeah, I think it’s safe to say we’ve had our tail ends handed to us by epilepsy for 15 years now.  But I refuse to just sit back and take it.  I’m always looking for ways to kick a little epilepsy fanny myself.  And last week, I saw the most beautiful display of epilepsy ass kicking I had ever seen.  It was when Savannah was invited to the high school homecoming dance by a wonderful, kind, handsome, football playing, popular, fun-loving, general ed teen from her school.  At first I was skeptical.  Who is this boy?  What’s his deal?  But I soon learned that he’s just a kind kid who doesn’t see Savannah for her limitations and wants her - and all the kids in special ed at her school - to have a great year.  Take that epilepsy! 
     Savannah went to the dance with this fantastic teen.  She danced, she met his many friends, and she grinned uncontrollably for the entire 2 hours that she was able to participate in the loud, pulsating, laser beam-abundant, rap music-dominated dance.  What a beautiful thing to see . . . a whole generation of teens who are kind, accepting, and look at the strengths  in others.  When I was their age, special needs kids were either in an isolated part of campus, or went to an entirely different school.  How things have changed.  And what an opportunity for both Savannah, and the teens that are becoming her friends, to learn from each other.  It was amazing to see.
     This whole experience, apart from making me cry (with joy for a change), reminded me that the way we kick epilepsy’s butt is in the seemingly small things we do.  Maybe we talk about epilepsy to educate others.  Maybe we learn about epilepsy to educate ourselves.  Maybe we donate money.  Maybe we fundraise for a cure.  Maybe we have a blog.  Maybe we campaign for equal rights.  Maybe we inspire others.  Maybe we love someone with epilepsy.  Or maybe we invite a seizure helmet-wearing outsider into the in-crowd.  In the things we do, we are the ones who make a difference in the fight against epilepsy.  And it’s these things that will lead us to a cure someday.  My good friend Jeanne Donalty who amazingly raises money every year for Citizens United for Research in Epilepsy (CURE) www.cureepilepsy.org had this phrase on the program of her recent fundraiser and I love it:

You believe.  You Give.  You are the cure!  

I would add: you are the epilepsy butt-kicker.  So this November, in honor of epilepsy awareness month, I would ask you to join me, Savannah’s new dancing friend, and epilepsy butt kickers around the world, and kick a little epilepsy butt of your own in whatever way you can. You are the cure!